IDD Medical Health Home NC Initiative

Members of the MHHI have made presentations to individuals with disabilities, family members, providers, and policy makers. A selected sample of recent presentations can be found here.

Supporting Families and Healthcare Providers to Provide Quality Care to Persons with Down Syndrome Across the Lifespan
NC Down Syndrome Alliance, April 2023

Getting the Most out of Your Healthcare
Dr. Crystal Bowe, The Self Advocate Conference, 2016

Amplifying the Connections Between Partners and Resources Vital to Whole-Person Care
Exceptional Childrens Assistance Center, 2021

Connecting Expertise to Communities to Support Comprehensive Care for People with IDD: Building on NC’s Assets
i2i Webinar, 2020

Olmstead Plan Comments

Embracing the Challenges of Integrated
Care for People with Intellectual and
Developmental Disabilities

The MHHI recognizes the importance of the role of families and value of lived experience in supporting whole person care for people with IDD and has advocated for the service. In September 2022, the MHHI submitted comments regarding the Family Navigation in lieu of Service Definition to DHB FN TP Comment Final 9-9-22.pdf. Members of the MHHI were involved on a subcommittee of The Consortium to write the following Family Navigation-Peer Support Approved March 2022.pdf.

A review of 2013 state Medicaid claims data found that for children and adults with I/DD:

• more than 75% of individuals eligible for Medicaid who have an I/DD are enrolled in a Community Care of NC medical home and had a primary care visit during the year

• most frequent reasons for inpatient hospital admissions were respiratory infection, convulsions, superficial injury higher costs for medications, personal care, inpatient hospitalizations, durable medical equipment than other Medicaid beneficiaries

• are on higher numbers of antipsychotics, ADHD medications, and mood stabilizers than other Medicaid beneficiaries

• top chronic health conditions are similar to those experienced by other Medicaid beneficiaries and include hypertension, diabetes, chronic GI.

A Few Key Data Points:

• The prevalence of North Carolinians with I/DD is 188,124 children and adults based on the North Carolina Council on Developmental Disabilities Five Year Plan, 2017-2021, published in 2016.

• Only a limited number of children and adults with I/DD (approximately 12,500) are served by the Medicaid Innovations Waiver in North Carolina. There is an extensive waiting list for an innovations waiver slot.

• According to a 2012 study adults with IDD experience high rates of chronic health conditions, see illustration. (Hsieh K, Rimmer J, Heller T. Prevalence of falls and risk factors in adults with intellectual disability. American Journal of Intellectual Development Disability, Nov;117(6):442-54)

• Individuals with complex care needs have significantly higher expenses than other Medicaid patients and are at risk of higher costs in their future, according to a 2014 report on Models of Care for High Need, High Cost Patients published by the Commonwealth Fund

• The number of children and adults with I/DD accessing the emergency department has grown significantly to over the last several years.

• Individuals with IDD are treated with psychiatric medications at high rates and often with off-label indications. Matson and Neal, 2009, Psychotropic medication use for challenging behaviors in persons with intellectual disabilities: an overview. Research in Developmental Disabilities 30, 572-86.

• More than 70% of children and adults with I/DD are supported by their families and more than 25,000 adults with I/DD live with caregivers over the age of 65. The Cost of Caregiving Report, published by Dr. Tamar Heller in 2014, Developmental Disabilities 30, 572-86.